Hi, does anyone get nausea with this? I’m newly diagnosed (2 weeks ago) I’ve not seen a specialist yet. I’m waiting for an appointment. Liver function has been abnormal for about a year but that was put down to my gallbladder & I had it removed in July last year. I’ve had issues ever since the op & have not been right since all this started about a year ago. Numerous visits to the gp & many blood tests brings me to this situation I am in right now with being told I have this disease. My main issue is I wake up feeling sick most mornings, I’ll have it for a week or 2 then it subsides but will then come back. It’s awful, sometimes it wakes me up so early Like 4 or 5am & I have to get up because I just can’t get back to sleep because I feel so sick it’s making me exhausted. When I’ve been up a while it seems to get better & I can carry on with my day. I’ve not really seen much about this so I was wondering if anyone else had it or if anyone knows if it could be related.
xx
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Karaxxx
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Are you on URSO? Sometimes Ursodiol can cause nausea if not taken with food. If you haven't started URSO, can it be acid reflux? What you are describing sounds exactly like what I was experiencing not long ago. My hepatologist wanted me to take one 20mg Prilosec every day. I didn't like the idea of yet another drug going through my liver. Plus I'd read Prilosec wasn't good for you long term. I instead opted for cheap generic Famotidine. 10mg once a day did the trick for me. No more nausea. 👍
Hi guys thanks for your replies. I haven’t started any medication yet. I’m waiting to see a liver specialist. My gp has told me I have this disease after running numerous blood tests so has referred me to the liver team. I know it sounds daft but I don’t think Ive had acid reflux. I’ve never suffered with it before & this sick feeling is literally when I wake up, it wakes me up. Is that what it is? Is it what it does? Is it related to this or something totally different? I’m trying to ascertain if this is to do with my gb surgery last year or if it is in fact a symptom of this disease.
It could just be stress. It's hard while you are waiting to see a heptologist, and worrying about what's going on. PBC is not the dread condition it used to be seen as. When you have been checked out by a PBC specialist, and the diagnosis is properly confirmed, then medication can start. After a settling down period, most people are okay, and can get on with life as normal.
Do, please, check out the 'PBC Foundation' who host this site on 'Health Unlocked' (click logo above, or just Google). They were set up by someone who developed PBC over 20 years ago - when there was little info about. The advisors are wonderful (phone or email), and if you join - it's free - their website is full of up-to-date info and advice.
Meanwhile, try not to stress - always the worst for any autoimmune condition. Treat yourself, and have fun, do things you love.
Take care,
Gritty
Hi Kara, I was diagnosed about 8 yrs ago. I take urso. I had frequent morning nausea when I hadn't eaten for many hours. Gastrologist reccomended that I have a plain biscuit (Rich Tea or such) before bed. That works for me. If I forget and wake up feeling queasy at 0400 I have the biscuit and even cup of tea, then go back to sleep. The nausea always goes when I eat. Would it be something that works for you?
Best wishes
• in reply to
More to the point on my last reply, GI said 'liver doesn't like to have nothing to do' so better not go too long between meals. I have 5 small ones a day and feel better for this. When I fast 24 for procedures (colonoscopy) I feel very nauseous. Don't know if specifically PBC, but fairly sure it's my liver.
Hi thanks for this... it’s funny you should say that because when it wakes me up I end up getting up, Making myself cup of tea & have a couple of biscuits & it seems so subside. & that kind of makes sense, I can see the logic behind that. As you say though I don’t know if it’s related either but it all started a couple of months after my gb op & then I was given this diagnosis so I think it’s one of the 2! Surely I can’t have a 3rd problem! I’ve never been ill like this & it gets you down. I have to keep reminding myself it’s not as bad as it seems but still it’s a niggle in the back of my mind because no one knows how they are going to respond do they x
You are so right Kara, no one knows how they are going to respond. All I'm certain of is whether you do or you don't have a third problem you will take it in your stride. My specialist said it was usual to have 3-5 autoimmune conditions. They are just names. My body is still just my body. Sometimes it slows us down and makes us feel lost. Sometimes it surprises us into finding ourself again. But we can choose to accept the simple kindness of people we never met except on here. And that'll do the magic of making fear and worry disappear. That's important because they are the real diseases, fear and worry. We don't have to have them. Like Shulsey says, "Stay strong" x
Thanks for your responses, it’s all very new to me & i guess I’m still trying to come to terms with it. This group has been a huge help to me & I appreciate all of you who have replied. 😊
btw, don't know when your gb op was, but it can take a year for gastro-intestinal tract to settle after such trauma. So be kind and patient to your body while it tries to catch up!!
It was July so still fairly recent. I think they were just checking my bloods as I know a dodgy gb can elevate your liver results. They were high pre op & have been going in the wrong direction since that, which led them to this diagnosis. I suppose I should think myself lucky that hopefully if this has been caught early & maybe the problem with my gb has been a blessing in disguise. Fingers crossed that it’s all very early. My appt isn’t for another 6 weeks which I’m quite surprised about! I have so many questions & I’ve honestly been a wreck! This group has been a god send tho x
Yes, it's not been long since your op. And it's not long til your appointment either in terms of if you do even have PBC because PBC is such a slow moving process. Others here can reassure you more about that in clear terms especially Robert from PBC Foundation and any of the special advisers at the Foundation. Avoid wasting 6 weeks worrying. There's no need. Put your concerns if any here and you will get a useful/comforting response so that you go to your appointment more comfortably. Make a written note of your questions for the doc so you can leave them on paper, not floating round your head. It really helps. x Best wishes
I suppose it’s trial & error isn’t it. I rarely drink, only on social occasions which are few & far between anyway & now I’m too scared to touch another drop ever again! I’ve been ok the last 2 mornings. Not sure what I’ve done differently if anything at all. It will be back soon tho... it always is!
Yes I used to constantly feel ill and nauseous. Was prescribed ranitidine which sorted me out. Another tablet to take morning and evening but at least I feel much better now and rarely get the nausea. Hope you get seen soon. X
Thanks for all your replies everyone. You’ve all been a really big help & your words reassuring. You really are great & I feel lucky to have found this site 😊 Sounds like it may be a symptom from what some of you have said. Although I haven’t seen it on the “list”
I know I’ve not seen the specialist yet but my gp did say that with my abnormal liver function results & testing positive for the antibody that I have it. Was hoping they may have got it wrong. Maybe they have but realistically I don’t think so. 😞
So I thought I’d update you all.. I saw the specialist today who has confirmed PBC & I have been started on Urso. This is an incidental finding, the nausea & other symptoms I’ve got are another issue related to my gb surgery. Am booked in to have that sorted so hopefully will start to feel myself again once that’s done x
Thanks for updating us Kara. How is your blood pressure? Low BP is a feature for some PBCers. What we were saying earlier above here, about a biscuit reducing nausea, this fits with low blood pressure. The chemical reaction to that eating will be a sufficient raise in blood pressure to end nausea until next time BP drops. This is why fasting doesn't go well for all of us... I hope urso works as well for you as it does for me.
Thank you 😊 Generally my bp is ok, a little on the lower side but always has been. The doctor says my symptoms aren’t that of PBC & once they’ve done the procedure they want to do they should go. He’s given me some anti sickness meds in the meantime. I’ll start the Urso tomorrow, it was a lot to take in today. I also had one of those fibro scans. How clever is today’s modern technology!
Hi, just an update for everyone who took the time to respond to my post....my nausea seems to have gone. From being unwell since my gallbladder operation last year I was diagnosed with sphincter of oddi dysfunction (I’d never heard of it) Nausea & vomiting is a big issue with this apparently as well as the ongoing pain I’ve been having since the op. Again, another uncommon problem (I’m beginning to feel special with these random uncommon illnesses lol) from what I’ve heard & read about this, it’s pretty hard to get a firm diagnosis so I feel very lucky to have my consultant who clearly knows his stuff. I had a procedure for it a week ago & so far so good, I feel so much better having unbroken sleep!
Result! Thanks for telling us about it. Pleased to hear that you are sleeping well again and feeling better for it. Sphincter of Oddi Dysfunction - that's a good one to have to say! Very best wishes
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